Week 75

Dr. Kolker

Ryan went for his checkup at the ENT.  Dr. Kolker said his ear is healing nicely.  Phil gave Julia his IPhone to keep her occupied during the appointment and here are some pictures she took of Ryan during his check up.

Ryan came home with a story he learned from school about a hen, a mouse, a cat, and a dog.  He colored the paper and cut them out and used the pieces to tell a story about a hen who plants seeds, grows wheat, and turns it into flour to make a cake.  The animals don't want to help the hen do any of the work but all want to participate in the eating of the cake.  Over the course of the week Ryan has proudly told us and others this story.  Each time it changes slightly in regards to the words he uses, but the gist of the story stays the same.  Here's the video on You Tube.





In last week's blog entry Phil talked about the visit to Dr. Cowan and how he showed that Ryan thinks in pictures.  We repeated this activity with my parents this weekend and this time got it on video. 



Ryan's behavior has been up and down this week.  We even got our first "bad" report from Kindergarten that Ryan was unwilling to do his work one morning.  It was the day after an evening soccer practice and Ryan had numerous mosquito bites on his face and he was itchy and fidgety.  However, that very same day when I went to pick up the kids from their afternoon school, his teacher there said Ryan did an excellent job in the writing center that afternoon. 

I think Ryan has been struggling trying to get back into the swing of a routine and he is so busy that he is tired.  I can certainly relate as this past week was a difficult one for me as well having a full week at school with lots going on.  And I don't think it is going to get any easier in October or November as we have numerous events going on each and every weekend.  I guess it is better to be busy than bored, but I don't think any of us would mind a little down time now and again!

And I'll end with what happened at bedtime last night.  Ryan says to me, "Mommy, I love you a lot."  Me: "How much is a lot?"  Ryan, opening his arms wide, "All the way to my back." 

DC

Week 74

Back to School night and meeting Ms. Allen

This week we met with Ryan's teacher and teacher's aide on the afternoon of Parent Night.  They seem fond of Ryan and were willing to listen to some of our concerns and suggestions for Ryan to have a successful year.  We learned that Ryan has already mislead them in to believing that he does not eat breakfast in the morning before going to school.  Technically, that is true.  He doesn't eat at home, he eats at Young Hearts when he arrives there at 6:30.  He would arrive at school, saying he is hungry.  On the day we met with his teachers, that very morning he claimed of hunger and no breakfast at home when he arrived to Kindergarten and they allowed him to eat at a snack.  A snack of goldfish no less, which are not gluten free!  We were surprised to hear that Ryan accepted this gluten free snack.  He is usually so good about telling others when he is not allowed to eat something.  And they felt terrible when we alerted them to the fact that Ryan is on a special diet and it is outlined in his IEP.  Both Phil and I know what it can be like at the beginning of the school year getting to know all of the kids, so we can understand how they may have overlooked that on his IEP.  We also informed them of the breakfast situation and that it would never be the case that he doesn't eat breakfast before getting on the bus.  He is at Young Hearts for two hours prior to the bus coming, so he has plenty of time for a good meal!

Later on that evening I went back to the school for Parent Night and learned a lot about his teacher's expectations and the routines they are developing in the classroom.  I think Mrs. Allen will be a good match for Ryan.  She is caring, but also firm and routine oriented, and Ryan needs that.  It was my first time on the other side of the desk for one of these nights and I certainly like it better this way... less stress!  I'm not sure many parents understand the stressful part of being a teacher.  We know at times Ryan may add to that stress so we are planning to do our part to keep Ryan prepared and encourage him to do what is expected of him.

Ryan has already been given some handwriting assignments.  Here are some pictures of the kids working on their homework during the week.  (Julia wanted so badly to do homework as well!)

DC

Soccer Practice

We had our first soccer practice this week and of course it was a challenge with the fields still being closed.  The league called at about 5:00 PM to let us know that the fields were closed and that we would have to relocate our practice.  I sent an email out but only half of the team got the message and this was the week that the other coach could not make practice.  So by the time I got to the new field, had a parent volunteer to drive to the other field to see if he could find anyone, the other parents left all mad.  But we had a good practice.  He and another little boy decided in the middle of practice that they did not want to practice anymore and sat down to watch a video that Julia brought.  Julia came with us because it was back to school night at Ryan's elementary school.  However, after 5 minutes they both rejoined us without any prodding from me or other parents.  After practice was over the whole team ran over to the playground and all had a lot of fun running around.  Hopefully they will still enjoy that same type of relationship at the end of the season but we are off to a good start.  Next weekend, weather permitting, we will have our first game.

Meeting Dr. Cowan.

On Thursday, I took Ryan to meet Dr. Cowan.  This was our second meeting with Dr. Cowan but the first time that Ryan meet with him.  Ryan did great.  There was a train play set in his office and Ryan immediately started playing with it.  For over an hour Dr. Cowan put Ryan through a variety of different exercises both physical and verbal.  He had him write his name, draw different shapes inside one another, and had him copy and build different shapes using blocks.  It was easy to see that Dr. Cowan does this type of assessment a lot for he was able to guide Ryan through several transitions.  One of the most effective ways was using slight of hand to get Ryan ready to focus on the next task.  Ryan did great on all the tasks.  Dr. Cowan had a Richard Scary book out and was having Ryan explain to him what was going on in the pictures.  He was doing such a good job that Dr. Cowan turned to me and asked if Ryan had this book at home, which we do not.  Ryan blew me away with two of the tasks that Dr. Cowan did at the end to demonstrate Ryan's learning style.

One of our biggest worries with Ryan over the years has been him following directions.  He is good at one and sometimes two step problems but three have always been a struggle.  Dr. Cowan held up three different crayons and asked Ryan to put them in three completely different areas around the room.  Ryan did this without issue.  When Dr. Cowan did the same exercise but put the crayons on the table instead of holding them up in front of Ryan, he did not do as well.  He was able to do the first and third but forgot what to do with the middle crayon.  The last exercise really blew me away.  He had Ryan describe to him a movie that he just saw.  He drew six different boxes and inside each of those boxes he drew a small picture describing what was going on in the movie.  He then had Ryan come over to me and explain what was happening in each of the boxes.  Then Dr. Cowan took the paper away and quizzed Ryan.  He asked him what happened in the 4th box and Ryan described what happened in the square.  He quizzed Ryan on two more boxes not in sequential order and Ryan described it perfectly each time.  When I dropped off Ryan with Dawn, we did the same exercise and he was able to repeat the story and got the squares that I selected correct.   This was absolutely amazing.  Dr. Cowan illustrated that Ryan thinks in pictures, not words.

At the end of the appointment, Dr. Cowan diagnosed Ryan with Systematic Pragmatic Language Disorder (SPLD).  The ironic part is that this is not something schools test for and was one of the reasons Ryan tested out of Speech.  This is something that we will have to look into but it did give us a lot to work with both at home and at school.

Community Day Parade

On Saturday the town had a Community Day parade ending at the town fields for a huge carnival.  It was a nice parade but really disorganized.  They had all the under-ten players arrive an hour before the parade starts and just had them wait in a parking lot,.  It was total chaos but Ryan did well waiting.  He ran around with his other "orange teammates" and did well marching in the parade.  He did have one melt down after the parade was over.  There was a huge inflated slide in the middle of the carnival that he wanted to slide down very badly.  However, the line to get tickets was huge and just as equally long was the line to get on the slide.  We did not have time because Julia had to get to her audition for the Nutcracker.  We were able to go on one ride with Amelia and Alyssa, who along with Uncle T came to the parade but that was all we had time for.  Ryan still wanted to go on that slide and we did have a little difficulty talking him out of going on that ride.  But he eventually came around and left with us peacefully.  I was thinking that with the old Ryan I would have had to carry him out kicking and screaming out of the carnival. I like this new Ryan better. 

Waiting for the parade to start



Ryan very focused!

Stopping along the parade route to say "hi".

PC

Week 73

First Day of Kindergarten

Well the wait is over.  Ryan has entered regular Kindergarten at our neighborhood elementary school.  His first day was an orientation day.  However, both Dawn and I had to work that day so Nonna and Grandma stepped in and took Ryan to his first day.  They found his classroom and took him in to settle where all of his school supplies are supposed to go and took his first bus ride.  The bus ride was a simulated ride around the parking lot.  They lined up liked it was dismissal and then exited like they were arriving.  There is a picture of Ryan getting off the bus and he loved the ride.  He met his teacher, Ms. Allen and said she was very nice.  One of the activities during the orientation day was to fill out a small questionnaire.  One of the questions was what he wanted to learn most in Kindergarten.  He answered that he wanted to learn how to write.  However, he does not want to practice this skill with us on the weekends or evenings.

After the orientation, Grandma wanted to take Ryan and Nonna out to lunch as a treat.  When they were waiting for their food Ryan pulled a fast-one on them.  He told them that he is allowed to have one small piece of bread with a little butter.  When they questioned him further he told them that "Daddy told me that I could have a small piece at lunch".  Since I was working they tried calling me but I could not answer.  By the time I got the message and called back he already had the bread and butter!  Both Nonna and Grandma believed him because according to them he sounded so convincing!

On the second day the bus picked him up from the his daycare and drove him to school.  He said that he loved the ride and that he sat by himself "like a big boy".  When we asked him about how the day went he told us that Ms. Allen talked a lot and that he really wanted to do things.  When we pressed him what she talked about, he replied "Be nice to everybody"!  So far we are off to a good start and we will keep you informed.

Here are a few pictures of the first day of school.

Ryan and Julia on the first day of school

Ryan and Grandma

Ryan off the bus

Ryan and Nonna making a bee bracelet with beads

Ryan meeting Ms. Allen

Ms. Allen showing Ryan the room

Ryan's first soccer game was supposed to be on Saturday.  However, with all of the rain this past week, the field was too wet to play.  All of the different age groups and players with their cleats would have torn the field apart.  Ryan was a little confused when I told him that the game was canceled.  He looked outside and told me"see it is not raining".  Next week there are no games because we will be marching in the community day parade.  Hopefully the club can reschedule this weekend's game.

In the August 29, 2011 issue of Time magazine there is an article by Judith Warner about Autism.  The title of the article is "Autism's Lone Wolf Simone Baron-Cohen wants to know, Are 'autistic' traits a predictable outcome of new marriage patterns?"  The author reports on Simone Baron-Cohen's research looking at how marriage patterns might have increased 'autistic' traits in children.  His research looks at the history of women entering technology fields and how humans select marriage partners.  One of his biggest studies looks at three different areas in Netherlands.  One of these areas is considered the Dutch Silicon Valley.  The research reported that in this area alone children diagnosed with autism was two to four times higher than the other two areas that had the same socioeconomic status but not based on the technology field.  The researches noted that while the study is significant they warn that who you marry is not an absolute predictor of autism in children.  They are just noting that this was an interesting find and that they are attempting to replicate this study on a larger scale.  We are both not sure that we agree with the majority of the article but it did raise an interesting notion about why autism rates have exploded over the last few years.

While the rest of world was focused on September 11, 2011 as the tenth anniversary of the terrorist attack on the World Trade Center, it was also Grandparents Day.  We met in Kingston, NY for lunch at the Olive Garden.  Ryan was a little upset that everyone was having bread sticks so we gave him a small piece and a few croutons.  He has developed a taste for croutons and we have to watch our salads as he finds it funny to steal one when we are not looking.  He had a good time and below is a picture of the lunch.   

Ryan and Julia with Nonna, Papa, and Grandma.  

PC

Week 72

With the craziness of Hurricane Irene we did not post a blog last week.  I guess it was a good week to skip because we didn't have any new updates to share.  The kids spent most of the week up nonna's and papa's house.  Unfortunately the weather was not great and most of the time was spent indoors.

But we made up for a slow week with an extreme busy one this time around!


On Monday Ryan enjoyed celebrating Julia's 4th birthday.  Her party started at her dance school where the kids practiced dance moves, played games, and came up with a short dance routine.  We then headed over to a restaurant for pizza and cake.

Princess Julia and King Ryan

Ryan did a great job following directions, and enjoyed doing all of the dance moves.

This video is a MUST SEE!  Look at how Ryan is doing his best to concentrate and follow directions. (Maybe we should have signed him up for dance instead of soccer!) Then watch it a second time to see how Julia is following along, but a step behind everyone else because she would rather look at herself in the mirror than at the instructor!  These kids are a riot!

Click this link to watch the video: Dance Moves

Ryan loved Julia's cake so much that he told me he wanted a castle cake for his next birthday party!  Yes, I made the cake (with a lot of help from my friend Donna!)

As if one day of birthday activities wasn't enough, the next day Ryan attended his cousins' birthday party.  Amelia and Alyssa chose a Wizard of Oz theme.  They rented a big movie screen and played the movie while the guests sat on blankets and chairs.  We ate popcorn and snacks and cupcakes.  While most of the kids ran around waiting for it to get a little darker so the movie could begin, Ryan plopped himself down on the chair and waited patiently.  He didn't want to miss a thing!

Amelia and Ryan

Julia and Alyssa

Some of the kids wanted a picture with a surprise guest... the scarecrow!  Yes, that's me!

Before the summer ends and the new school year begins I thought it would be nice to stop by Noah's Ark so that the kids could see their old teachers again.  So on Wednesday we did some chores and then headed to their former school.  There were lots of hugs and tears... they missed the kids and the kids had missed them!


On Thursday Ryan was scheduled for surgery at 9:30 in the morning.  His doctor needed to remove the tube in his left ear (which was implanted February 2009 and still hadn't fallen out on its own) and place a patch over the spot where the tube was.  I was anxious about lots of things... him giving me a hard time about not eating or drinking in the morning, bringing him there by myself because Phil had to work, and trying to keep him calm so that he would cooperate.  I prepped him the night before and let him have a special toast and water snack in his bed (to which he replied "we've never done this before") and told him that he needed to fill his tummy before bed because we were going to skip breakfast in the morning.  He also helped me pack a stuffed animal and some snacks for the car ride home.  He wanted to know why he couldn't eat and I told him the doctor needed his stomach empty so that he could fix his ear.  He seemed to be okay with that.  

When he woke up in the morning he was okay with Julia leaving with Phil to go to school, and he was even okay getting ready and skipping breakfast.  When we got to the ambulatory surgery office he was a bit skeptical because it wasn't the usual office we go to for his ENT appointments, but he was happy to be there once he saw all of the toys they had set up in the waiting room. 
 
When we were called into pre-op, I ran into a bit of a snag.  Things had been going so smoothly up to this point but then the nurse had given him a hospital gown to put on, and he did not want to get undressed.  I could tell he was nervous; he was looking around at everything and he didn't even want to sit on the bed.  A movie was playing for him on the TV and he sat in the corner and watched.  He kept asking me if he was going to get a needle and if they were going to do something to his body.  I did my best to reassure him, and even got him to sit on the bed next to me.  He was very brave and did a great job while they took his vitals.  One of the nurses gave me my outfit to put on and told me that if I wanted to go into the special room to blow up balloons I had to wear it.  Once Ryan saw me put on my "surgical gear" he put on his gown and said he wanted to blow up balloons too.  The nurse "prepped" Curious George and gave Ryan an oxygen mask to play with and told him to practice blowing into it.  They then gave him a little liquid sedative (which he drank with no problem) to keep him calm.

At one point a nurse told Ryan that he looked like an astronaut with the mask on his face.  She then asked him if he wanted to go into space on a rocket ship when he gets older.  He replied, "No, cause then I would miss my family."  Awwwwww!!!!!  

He let us wheel him into the operating room.  The toughest part was putting the mask on him.  He was willing to put it on (and he started to blow into it because he thought he was going to blow up a balloon) but once he started to smell the gas, he fought it.  He shook his head back and forth for about 20 seconds until his eyes rolled into the back of his head and he was out.  The entire time I leaned close to him and rubbed his head and told him that it was okay and he could go to sleep.  It was the longest 20 seconds of my life!


The procedure took a mere 15 minutes and the doctor came out to tell me that everything went well.  About 20 minutes later they brought me into the recovery room and I stayed with Ryan while he slept.  

 He looked so peaceful, and then all of a sudden, about an hour into his sleep, he jolted straight up and started looking around asking me why he was in a different room now.  He wasn't in any pain and he kept talking about how he went to go blow the balloon and he fell asleep, and then he would check with me to see if that was correct.  I told him that he fell asleep, then doctor fixed his ear, and then they rolled him into this room so that he could finish sleeping.  Once he was discharged he was so excited to ride in a wheelchair back to the car. 

He relaxed at home for a couple of hours and then he was back to his old self.  He came with me to pick up Julia from her first day at her Pre K class and by late afternoon he was running around playing with Julia as if nothing had happened.  The only time there was any indication of a procedure that day was around bedtime when Ryan complained of a headache.  He complained twice which he rarely does so I knew it must be bad for him to say anything.  I gave him Tylenol and let him stay up a little extra time until he felt better.

On Friday Ryan attended Young Hearts for the first time.  We wanted him to get acquainted with the building, his classroom, and the teachers before he officially starts on Tuesday.  Tuesday will also be his first day of Kindergarten so we wanted to ease him back to school with just one new place at a time.  They said he had a good day; he made new friends and had fun playing.  He was smiling when we dropped him off and smiling when I picked him up.


It is hard to believe that the summer is coming to a close and school is right around the corner.  It was not a very "academic" summer and I'm sure Ryan has regressed with many educational tasks.  But he advanced in many other areas.  His social skills have progressed tremendously, as well as his communication skills.  He is not as shy as he used to be, he opens up more frequently about how he is feeling, and his patience has grown.  When he loses his temper or has a meltdown, we're finding it easier to bring him out of it than in the past.  We've also noticed that he is better at following directions and his memory is sharp.  And best of all, in my opinion, is the increase in his affection.  I've been getting showered with hugs, kisses, and I Love You's!


DC